Pineal Brain cyst/tumor

[cmb123070]

In September 2003 I was diagnosed with a pineal brain cycst, measuring 2cm x 1.5cm x 1cm.  I have had 4 separate MRI's since them.  In the previous 3 MRI's there was no change in the size of the cyst.  
I just got the report back on the fourth MRI, which was done on 10-21-05.  The cyst is now measuring 2.8cm x 1.6 x 1.2
The report reads "Since 12/8/03, a cystic lesion in the region of the pineal gland has slightly increased in size and it has lobulated or multiseptated appearance which is unchanged.  No peripheral or internal enhancement.  Most likely this is either a pineal cyst or pineal cytoma although findings are non-specific.  No hydrocephalus.  Follow-up as clinically indicated."
I am waiting for an appt with my neurosurgeon, but wondered what the above means.  I am mostly concerned with the words lobulated and multiseptated.  
I also recently began experiencing "floaters" and saw an opthamologist.  He said my retna and pressure looked good.  I am waiting for an appt for a "vision fild".
My report also reads "This lesion is of slightly lower signal intensity than gray matter on diffusion weighted images".  What does that mean?  It's like reading a foreign language.
The cyst is also flattening my tectal plate.
Any info you can give me on this report would be greatly appreciated.  Thank you!

[CCF-Neuro-M.D.-PW]

THe report contains language that is meant for a medical professional, hence it seems like a 'foreign language' to laypeople!

Although the measurement has increased it is a minimal and probbaly insignificant change, there is also difference attributable to a different person measuring it a bit differently etc
lobulated and multispetated are just descriptive terms about its appearance meaning that the cyst (a fluid collection surrounded by a lining) also has some lining within the cyst dividing it up a bit, something that occurs with many cysts. The intensity is just a descriptive term regarding the color of the cyst - that it darker compared to another area, also consistent with the fact that fluid on this type of scan (ie fluid in the cyst) normally apeears darker than solid material

The flattening of the tectal plate means that there is some pressure on the part of the brain below the cyst - I cannot tell how bad from the internet, some symptoms that could occur if significant would be vertical double vision, persistent headache, jerky eye movements, but probably not just 'floaters'

Good luck

[Tarheeljoe]

I submitted a posting on Pineal Gland Cyst Nov-05 for my wife.  Symptoms were constant headaches, double vision.  Her Drs kept telling her that the cyst was not large enough to cause the symptoms she was having. Her symptoms became progressivly worse. Dr. Anthony Asher at Charlotte Neurosurgery and Spine operated and found that the cyst was leaking some type of toxins.    She has fully recovered and has no headaches and very slight double vision on the far right side.  You need to be persisitant with your Drs.  They have been taught that pineal gland cysts below a certain size do not become symptomatic. This not always the case since thay can leak toxins and may have underlying tumers.  I don't mean to scare you. Seeing a Nuero-Opthomologist and a Nuerologist for a field of vision study and to examine the upward gaze of your eyes helped to convince the surgen that there was a problem.  Pressure on that part of your brain affect the upward movement of your eyes thus the double vision. During this time her periods became irregular and stopped all together.  Withing 2 days of the surgery her periods started back and have been right on time ever since.  You may not experience the same problems my wife was having, if you are, be persistant with the Doctors. I will keep you in my prayers.

[Shell96]

Does ur cerebellar tonsills even slightly fall beneath the formen magnum , if so ur tumors andcysts may infart and u may end up with a chiari malformation.. Do you'll hav bone pain and fractures too? You'll have a genetic disorder effecting ur neuroendovrine system . Check ur family history!!! It's killing me and has killed most of my family. Been diagnosed with alot. Get check for pagets disease and albrights disease .

[cheryl469]

A related discussion, Pineal cyst was started.

[oladybug]

I am 31 and was diagnosed with a Pineal Cyst two months ago; don't know the size, but I do know there is no hydrocephelus. Like a lot of people, it was an incidental finding from a CT Scan that I had when I ended up in the ER on Oct. 19 with the most massive migraine I could ever imagine. I see a neurosurgeon next Monday, Dec. 19 and I am praying my worst fears are not recognized and be dismissed by the doctor as so many are. I too have vision trouble (mostly in my peripheral vision going out for about 10-15 minutes at a time); I feel like my body and brain function separate from one another even having my brain check out and leave me clueless for the 10 minutes that might have just gone by (even happens when I'm driving, but I've managed to stay safe and on course), sometimes I can't remember what to do with common objects, my train of thought is just about nil and I use the wrong words; I have numbness and tingling in my arms and then sometimes my right leg gives out on me, but I've yet to fall and I drop things if I have them straight down to my side. I have printed a lot of stuff from the internet to take with me on Monday and I pray the doctor will listen to me and at least refer me to someone who might know if he doesn't. I pray good things for all of you.

[LisaSt]

I was diagnosed with a pituitary tumor and a pineal cyst 5 years ago after having irregular periods. I was told that the pituitary tumor could cause minor problems with getting pregnant, but that the pineal cyst was nothing, I would never have symptoms. I was started on a birth control called Yasmin. After having several more MRI's, I was told that the pit tumor was gone. This year, specifically the weekend of Halloween, I got a migraine, only the headache has never went away. I had another MRI done Nov 23, and it showed that the pituitary tumor was back, as was the pineal cyst. I have been to several doctors, and have taken Excedrin Migraine, (which I have found out is only a marketing ploy, it has the same ingredients as regular Excedrin, including the caffeine.) I have taken Imitrex, Prednisone, Topamax, and Migranal. I still have a headache, some days more intense than others. After taking all these medications, my new perscription is Riboflavin 200 mg twice a day. I am starting that today. This perscription comes from a top headache doctor in St. Louis. Has anyone tried this before? He claims that the pit tumor and pineal cyst have nothing to do with my headaches.  

[jterry]

Hi Everyone,
My name is Jodi. I am 27 and live in FL. I am having some symptoms and my research has lead me here. I have had these symptoms off and on for about 4 years but now they won't go away. I work for a family practice doctor and while at work in August I experienced some strange symptoms- dizziness and floating feeling, bright and fuzzy eyesight, headache, nausea and felt like passing out. I have problems with low blood sugar occasionally so I thought that was what was wrong. I went in to see the doctor and he found I also had hearing loss on one side. He sent me for an MRI worrying that I had a tumor behind my ear. My MRI was normal except they found a 9mm cystic lesion in the pineal region as a secondary finding. 2 days after the MRI my right eye pupil started acting weird. The pupil is larger than my left eye and dilates and shrinks when my left eye does nothing. I had never had anything like that happen before. I went to an opthamalogist and had a field of vision test. My pressure is normal and minimal loss of peripheral vision was noted. Nothing suggested any stroke or other problems. My opthamalogist noticed my pupil but my family dr. refuses to note anything about my pupil dilating like it does. Ever since that day I have high blood pressure when I used to have normally low blood pressure and occasionally I will have an attack when my blood pressure drops very low and I get very very lethargic. I have migraines about every other day that was not normal before. I am tired all the time and have no energy. I have not had a period in 2 1/2 years and no doctor can tell me why. My family dr. has said that the cystic lesion has nothing to do with any of my problems and that I have Meniere's disease causing my vertigo, tinnitis and hearing loss. I don't have insurance. I don't know what step to take next. It was suggested that I have a repeat MRI just 3 months after the first but without insurance I haven't been able to afford another one yet. Does anyone know if there are any programs or doctors that are willing to help with something like this. I feel like I am getting the run around since I have no insurance and all the while I feel so sick and miserable. Thanks for any help.

[Tarheeljoe]

Kenny2,

I am by no means an expert on this area only someone who has a loved one who went through hell before she got resolution to her symptoms.

If you are not confident of the diagnosis then seek more help by second or third opinions.  The doctors have been trained that pineal cyst rarely become sympamatic. Even the best Nureosurgon only sees 3-5 cases a year.  Peadiatric nuerosurgons see more of this than adult nurosurgeons.

Learn as much as you can from the Internet and have you facts in order when you see the Nurosurgeons. It would be a good idea to see a Neuro-Opthomologist and a Neurologist.  They can see movements in the eyes that others may not pick up.  Sometimes the size is not large enough to put pressure on the brain but bleeding or seepage can irritate that area of the brain.  

I will check back if you have any questions.

You can also send an email to Tarheel_Joseph***@****

[kenny2]

My daughter is 8 years old, she was born with brown syndrome and had surgery for it at age 2. After a few years she started complaining about double vision, I took her to the doctor and after about a year he said she needed surgery to correct the double vision. Before the surgery she had and MRI done and it came out that she has a pineal cyst of about 1 cm; the doctor said that it wasn't anything serius and did the surgery in May of 2005, he promised her that as soon as she'd come out of surgery she will see a difference. Well, my daughter woke up and all she wanted was to open her eyes to see the difference, to her dissapointment she still was seeing double. The doctor said that it will get better but it hasn't,  she still sees double and I'm very sure is caused by the cyst. It's very frustrating!!!!!!! She is a great kid full of energy and compensates her vision very well. Now I'm wandering if she should have surgery for the cyst. She had another MRI done in October and shows that the cyst has grown a little bit. I'm very scared and confused, help me!!!

[Tarheeljoe]

You should see a nuero-othomologist to have a complete eye exam.  He/She should be able to see any problems with your vision and eye movement.  Pressure in this part of the brain can cause difficulty in moving you eyes upward thus you get some unusual eye movements and double vision.  The neuro-othomologist should be able to see this and discuss with the nuerologist and neuro-surgen.

Many nuerosurgens are reluctant to do surgery just for headaches. When other symptom occur it becomes a different issue. I went through this with my wife and I understand how debilitating the headaches and double vision can be. She discribed the headaches as wearing a football helmut that is 3 sizes to small.  More of a pressure feeling than a tension headache.   Nothing worked on the headachs and they grew worse along with the double vision.  These cyst can also disrupt the flow of spinal fluid an thus increased inter-cranial pressures. The solution is sometimes a shunt.  It may or may not work but can create or increase chances of sizures.  You have to weight the risks.   The surgery is not simple   You need to be presistant with the doctors about you pain levels. Anymore questions let me know.  I will check back.

[LeahChanel]

I went in for an MRI to figure out why I was having weakness and pain in my legs, at my Neurologist request.  At that time he found a 1cm pineal cyst.  After that I had two more MRI's with the same conclusion, my last one being in April 2005.  It had never really bothered me and I had never had a headache, much less a migraine.
Well, come July, I started getting these headaches.  They started off as just an inconvenience; then over the past four months have dibilitated me.  The pain is sharp and all over.  I can not move my head/neck too far either direction, and I can not look up with my eyes, due to the pain, along with double vision.  I have also become very confused and disoriented, along with being extremely exhausted.  I am scheduled to get a CAT scan this week, per my Neuro-surgeon, to track the path of my spinal fluid and I have gone to my primary care DR, a chiropractor, and my neurologist and begged for help.  I can not function normally anymore and I am only 26.  They all say that the headaches are migraines, or tension headaches.  Maybe even stress headaches.  But seriously, I have had a headache for four months solid.  It never goes away it just grow worse.  Everyone thinks I am being paranoid, and I do not know how to get through to my Doctors that something is terribly wrong.  If anyone has any advice, I would really appreciate your thoughts!  Thanks for your time!          

[cmb123070]

Back in 2003, when I had my first MRI, it was because I was having horrible headaches.  It almost felt like my brain was swollen.  My eyes would also swell up & I was very light-sensitive. HOWEVER, I went off the birth control pill in November of 2003 & my headaches got better.  I still get headaches, but nowhere near what they used to be!  
Recently I have been having vision problems, specfically "floaters" and times when I have a hard time focusing (I guess that would be double vision).  It comes and goes though and is not constant.  I had an eye exam done that checked my retina, eye pressure and cornea & vision.  It all checked out ok, but my neuro-surgeon wants a vision field done & I am awaiting my appt on that.

[cmb123070]

Thank you so much for your response.  I will keep everything you said in mind when dealing with my neurologist and vision testing.  I am just waiting to hear from the doctor today to see if they want me to come to Chicago to have the vision field done up there or wait for my appointment I have scheduled on 11-29-05.  Chicago is about an hour drive for me, but I will do whatever he thinks is best.  
Everything I have read on surgeries in that area of the brain tell of how risky it is.  I am glad to hear your wife is doing well.

[nervistcc]

In the course of a neuro examination for sensory problems and muscle cramps they found a pineal cyst. Its about 1 cm by 1 cm by 1cm. I was told that its not causing my symptoms and I shouldn't do anything except monitor it. However, subsequently, I've read of smaller cysts causing people problems and needing surgery. I've never had any kind of surgery, more less brain surgery. I'd appreciate someone with first hand knowledge telling me what to expect. How much down time can I expect? - I can't miss too much work. What are the chances of having residual deficits? Even though my neuro says wait and see, should I make an appt with a surgeon?

[Tarheeljoe]

Are you having the same symptoms of headaches and double vision?

Surgery always has it's risks.  The approach they take to get to the pineal region is from the base of the scull just above the neck.  They put you in a position with your chin rolled down to your chest.  This view provides a direct view of the area without having to move any parts of the brain out of the way.  Unfortunatly my wife had difficulty due to her large chest.  Basically the surgen stopped the procedure after 4 1/2 hours due to problems with her breathing.  The second time, they went in from the side above and behind the right ear.  There are more complications with this route because they have to lift up the part of the brain that processes the vision and it does not provide as good a view to the pineal area.  It was about a week before her vision was normal.  

Another important thing to keep in mind if surgery is decided is to find a surgen that has done this procedure more than once.  The ricks are lower when you have a surgen that has done this procedure.  You will not find a surgen that specializes in the pineal cyst.  The surgens that do this work are usually specialist in brain tumers.  My wife's surgen does approx. 250 tomur surgeries a year. Of those only 5-6 are in the pineal area.  I will check back if you have any more questions.